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Seminar ‘demystifies orphan disease’

People with pulmonary hypertension (PH), in general, have to visit an average of three doctors before they are diagnosed correctly with this chronic and terminal disease, for which there is no cure at this stage.

This is what Denneys Niemandt, chairperson of the Pulmonary Hypertension Association of South Africa (PHASA) and himself a PH patient, said at the Pulmonary Hypertension Awareness Seminar that took place at the Wanderers Club in Johannesburg on 3 November.

Denneys Niemandt, chairperson of the Pulmonary Hypertension Association of South Africa.

PHASA is a non-profit organisation that was started approximately three years ago: The organisation aims to make the general public, doctors and key role-players in the medical industry aware of this somewhat unfamiliar, but life-threatening, disease.

“PH was first described more than a hundred years ago,” said Prof Mohammed Rafique Essop, one of the seminar speakers, who talked on the diagnosis and evaluation of PH. “Yet the level of unawareness in this day and age is mind-boggling. With this seminar we want to take PH out of the closet; we want to demystify this orphan disease.”

Eastern Times incorporating Northern Times did a feature on PH earlier this year explaining that PH is, in layman’s terms, a disease affecting the arteries of the lungs. People who suffer of PH have to take life-long medication to prolong their lives as there is currently no cure for PH.

Some of the other speakers included Dr Paul G. Williams, a critical care specialist, who spoke on the management of PH in South Africa as well as Dr Gunther Schleicher, who explained the different “levels” of PH, while Dinkey Cohen discussed the role physiotherapy can play in a PH patient’s life.